In the Media

[Mark S]

Amanda asked this in April and 4 months later there is a wave of media stories.

I want to watch the Ady Barkan documentary and the stories of Chris Snow are inspiring to me.

There is also a documentary about Selma Blair and her life with MS.

How do the celebrity spokes patients make you feel? I have very strong and mixed emotions about what is becoming a bit of a distinct genre.

 

[Laurie Tomasello]

Not once

[Carol]

Once in June, watching a baseball game.  It was Lou Gehrig’s Day

[Richard]

Never!

The ALS associations responsible for getting-the-word-out about ALS are failing.

 

Richard

 

[NJGuy]

Yes I totally agree with Richard 🙁

And there seems to be no action plan or initiative, and the trials take their own pace.

AND pALS are suffering! And God only knows when there will be a real cure!

What is the way out????

[Richard]

NJGuy, I agree with you when you say: “trials take their own pace.”

 

Here is an example: On December 24 2021, there was this news story that said the following:

 

“Japan’s Yamagata University said Friday it has found that a drug being developed for the treatment of Alzheimer’s is also effective in treating amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease.”

 

That sounds very promising.  However, further down in the article it says:

“The research team aims to start clinical trials involving human patients in 2024.”
Really…2024?!  Research moves at a snails pace.

 

Here is another example of insufficient media attention:

I went to visit a hospital patient yesterday (12/29/2021).  Prior to entry, a hospital COVID receptionist needed to verify my vaccination status along with a photo ID.  I struggled to remove my vaccination card and ID from my wallet.  Sensing the receptionist frustration with my lengthy and cumbersome effort, I felt that I needed to explained why I was struggling to provide her the required hospital entry information. I said to the receptionist “Have you ever heard of Lou Gehrig Disease or ALS?”  She said “No.”  I just couldn’t believe her response! How could that be?  Especially for a person working in a hospital.

 

Another example of insufficient media attention:

May is ALS Awareness month.  The biggest problem with the ALS Awareness initiative is that the non-ALS community does not get informed adequately.  Loads of emails get sent out by different ALS and neurological organizations mentioning that May is ALS Awareness Month. However, the people receiving the emails already know about ALS.  It’s more important to get the word out to people unaware of ALS.   That’s like telling the person who just jumped out of an airplane that a parachute was necessary, instead of telling the people still on the plane who are getting ready to jump out.  The general population, not just people affected by ALS need to be reached in understanding and supporting ALS research.

 

It’s better to light a candle than curse the darkness. So, my friend Jim and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness.  If others did the same as we did/do, then maybe the media will take notice. Below is an example of what an email to these organizations could contain:

 

Hi.

The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.

Even though the month of May is over, any time is a good time to make others aware of ALS.

Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.

It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:

1. There are no known causes, no effective treatments or cure.
2. Motor Neuron Diseases such as ALS are increasing in the USA.
3. Only four states have declared May an ALS awareness month.
4. Raise awareness about the difficulties faced by ALS patients and their families.
5. Ask your Senators to support new and increased funding for ALS research.
6. Advance policies that improve the quality of life for ALS patients.
7. Expand the network of support for those suffering from ALS.
8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
9. ALS research is underfunded.

One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “An over-Look Sickness” or “A Lack of Support”.

It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.

My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.

You can contact the following ALS organizations for more information about ALS:

The ALS Therapy Development Institute (ALS TDI) –
The ALS Association –
I Am ALS –
Steve Gleason Foundation –
The Les Turner ALS Foundation –
North East ALS Consortium –
MDA –
EverythingALS

Thank you so much for your consideration and all my gratitude!

Richard

 

[Richard]

NJGuy, I agree with you when you say: “trials take their own pace.”

 

Here is an example: On December 24 2021, there was this news story that said the following:

 

“Japan’s Yamagata University said Friday it has found that a drug being developed for the treatment of Alzheimer’s is also effective in treating amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease.”

 

That sounds very promising.  However, further down in the article it says:

 

“The research team aims to start clinical trials involving human patients in 2024.”

 

Really…2024?!  Research moves at a snail’s pace.

 

Here is another example of insufficient media attention:

I went to visit a hospital patient yesterday (12/29/2021).  Prior to entry, a hospital COVID receptionist needed to verify my vaccination status along with a photo ID.  I struggled to remove my vaccination card and ID from my wallet.  Sensing the receptionist frustration with my lengthy and cumbersome effort, I felt that I needed to explained why I was struggling to provide her the required hospital entry information. I said to the receptionist “Have you ever heard of Lou Gehrig Disease or ALS?”  She said “No.”  I just couldn’t believe her response! How could that be?  Especially for a person working in a hospital.

 

Another example of insufficient media attention:

May is ALS Awareness month.  The biggest problem with the ALS Awareness initiative is that the non-ALS community does not get informed adequately.  Loads of emails get sent out by different ALS and neurological organizations mentioning that May is ALS Awareness Month. However, the people receiving the emails already know about ALS.  It’s more important to get the word out to people unaware of ALS.   That’s like telling the person who just jumped out of an airplane that a parachute was necessary, instead of telling the people still on the plane who are getting ready to jump out.  The general population, not just people affected by ALS need to be reached in understanding and supporting ALS research.

 

It’s better to light a candle than curse the darkness. So, my friend Jim and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness.  If others did the same as we did/do, then maybe the media will take notice. Below is an example of what an email to these organizations could contain:

 

Hi.

The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.

Even though the month of May is over, any time is a good time to make others aware of ALS.

Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.

It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:

1. There are no known causes, no effective treatments or cure.
2. Motor Neuron Diseases such as ALS are increasing in the USA.
3. Only four states have declared May an ALS awareness month.
4. Raise awareness about the difficulties faced by ALS patients and their families.
5. Ask your Senators to support new and increased funding for ALS research.
6. Advance policies that improve the quality of life for ALS patients.
7. Expand the network of support for those suffering from ALS.
8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
9. ALS research is underfunded.

One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “An over-Look Sickness” or “A Lack of Support”.

It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.

My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.

You can contact the following ALS organizations for more information about ALS:

The ALS Therapy Development Institute (ALS TDI) –
The ALS Association –
I Am ALS –
Steve Gleason Foundation –
The Les Turner ALS Foundation –
North East ALS Consortium –
MDA –
EverythingALS

Thank you so much for your consideration and all my gratitude!

Richard